EQ-5D-3L and quality of life in total knee arthroplasty (TKA) patients: beyond the index scores.

BACKGROUND: Many patient reported outcome measures (PROMs) generate single number index scores that summarise responses to different questions within a questionnaire. Although these are valuable as unambiguous indicators of ill-health and changes in health, further information can be gained from examining the questionnaire responses themselves. This has additional importance since the patients' reports are those responses and not the index scores. This paper reanalyses data from two prospective multicentre clinical studies assessing patients' quality of life before and after total knee arthroplasty (TKA) using the EQ-5D-3L. Patients who completed EQ-5D-3L questionnaires at 3 time periods were included from 4 countries (USA, UK, Australia, New Zealand) operated on by the same surgeons using two different knee replacement systems. Descriptive analyses included levels within EQ-5D dimensions and profiles (combinations of dimensions and levels) at baseline and follow-up, including changes over time and differences between implants. Regression analysis quantified the relationship between the profiles and the EQ VAS. RESULTS: Problems with mobility, usual activities and pain & discomfort, in that order, were most frequent for pre-operative patients. There were large improvements in every dimension after surgery, but the time that this was observed differed: for mobility, self-care and anxiety & depression, most of the improvement occurred during the first 10 months; for usual activities and pain & discomfort, over 11-22 months. Analysing profiles, 85% of patients experienced an unequivocal improvement, 5.9% had no change, 3.5% worsened and 5.5% a mixed change at 11-22 months follow-up. Anxiety & depression had the greatest impact on EQ VAS scores; while mobility and usual activities were also important; usual activities was particularly important post-surgery. CONCLUSIONS: The value of analysing patients' responses to PROMs questionnaires without using summary scores was confirmed. The results add further detail to existing knowledge about the health problems that TKA patients experience before surgery, improvements after surgery, residual problems that some have, and the time at which improvements are experienced. This was a small study, but its methods may be easily replicated in other studies that use the EQ-5D-3L. It may also be possible to adapt them for other PROMs.

Access to fertility preservation for trans and non-binary people in Aotearoa New Zealand.

There is a growing need for healthcare professionals to discuss fertility preservation options with trans and non-binary people before commencing medical transition as part of informed consent-based models of care. In this article, we adapt the Five-A framework of healthcare access to examine fertility preservation information and services. To do so, we present an analysis of data from Counting Ourselves, the first comprehensive national survey in Aotearoa New Zealand of trans and non-binary people's health and the first study exploring their access to cryopreservation information and services. Among 419 participants who had received gender-affirming hormones or surgery, 33.7% received information about options for fertility preservation and 15.8% accessed fertility preservation services. Findings from the study indicate the need for greater understanding of trans and non-binary people's desire for genetically related children, and what type of information and form of delivery would be most helpful to ensure equitable outcomes in relation to decision-making around fertility and future family-building.

Ka mura ka muri: understandings of organ donation and transplantation in Aotearoa New Zealand.

In this article, we refer to the separation of solid organs from the body as bio-objects. We suggest that the transfer of these bio-objects is connected to emotions and affects that carry a range of different social and cultural meanings specific to the context of Aotearoa New Zealand. The discussion draws on research findings from a series of qualitative indepth interview studies conducted from 2008 to 2013 with Maori (the Indigenous people of Aotearoa New Zealand) and Pakeha (European settler New Zealanders) concerning their views on organ donation and transplantation. Our findings show both differences and similarities between Maori and Pakeha understandings of transplantation. Nevertheless, while many Maori draw on traditional principles, values and beliefs to reflect on their experiences in relation to embodiment, gift-giving, identity and well-being, Pakeha tend to subscribe to more Western understandings of identity in terms of health and well-being, in line with international literature on the topic. Rather than reflecting individualistic notions of the body and transplantation as the endpoint of healthcare as do Pakeha, Maori views are linked to wider conceptions of family, ancestry and belonging, demonstrating how different rationalities and ontologies affect practices and understandings surrounding organ transfer technology. In the article, we focus predominantly on Maori perspectives of organ transfer, contextualising the accounts and experiences of our research participants against the backdrop of a long history of settler colonialism and health inequalities in Aotearoa New Zealand.

Altruism, solidarity and affect in live kidney donation and breastmilk sharing.

Social scientists have recently diverged from mainstream bioethical discussion on the topic of the medical use of human biological materials for therapeutic, reproductive and research purposes. Rather than justifying the donation and provision of biological materials solely in terms of alleviating physical, psychological and social suffering, saving or enhancing life, and advancing biomedical knowledge, this work looks beyond humanist bioethics to take a social justice approach to questions of the life sciences. In this article, I draw insight from these accounts to propose an approach to the sociology of live kidney and breastmilk donation that is situated at the interface of the new sociology of morality and affect studies. To do so, I examine the moral economy of tissue provision with respect to its organisation around the discourse of altruism and the gift. I then turn to recent work on tissue economies, which are in the business of creating and producing biovalue, to discuss the manipulation of affect and the entanglement of new forms of bio-intimacy in the production and reproduction of somatic life. The aim of the article was to contribute to the study of the sociology of donation as a substantive field of specialisation within sociology.

Systematic review of aged care interventions for older prisoners.

OBJECTIVE: The care of older prisoners is a growing problem. This review examined aged care interventions in prisons. METHODS: A systematic review was conducted following preferred reporting items for systematic reviews and meta-analyses guidelines. A total of 1186 abstracts were screened for inclusion. Quantitative and qualitative studies were included. RESULTS: Two quantitative studies and five qualitative studies examined aged care interventions (n = 7). An intervention involving physical health activities was not effective in reducing distress compared to a control, and an intervention of psychosocial, physical and spiritual health activities for veterans was not effective when compared to a comparison group. Qualitative analysis generated themes that apply to best practices: addressing older prisoners' needs, identifying barriers for older prisoners and staff, considering the prison culture, program delivery and cultivating older prisoners and staff attitudes. CONCLUSION: This review found no significant interventions in prisons. However, the qualitative findings showed evidence of best practice.

When the treatment stops: A qualitative study of life post breast cancer treatment.

Public attention focuses on breast cancer treatment and fundraising; however, there is limited discussion about life post-treatment. Once treatment is complete, there can be societal expectations of newfound wellness. To understand this phenomenon, the narratives of nine women post-treatment were explored. Analysis revealed the adoption of the sick role by the participants, the vulnerability experienced with the cessation of treatment, the disturbance of moving on from the security of the medical system and the patient and doctor relationship. Findings emphasised that survivorship can remain challenging and can present adverse psychosocial implications for women and those close to them.

Expanding the conceptual toolkit of organ gifting.

In jurisdictions where the sale of body tissue and organs is illegal, organ transplantation is often spoken of as a gift of life. In the social sciences and bioethics this concept has been subject to critique over the course of the last two decades for failing to reflect the complexities of organ and tissue exchange. I suggest that a new ethical model of organ donation and transplantation is needed to capture the range of experiences in this domain. The proposed model is both analytical and empirically oriented, and draws on research findings linking a series of qualitative sociological studies undertaken in New Zealand between 2007 and 2013. The studies were based on document analysis, field notes and 127 semi-structured in-depth interviews with people from different cultural and constituent groups directly involved in organ transfer processes. The aim of the article is to contribute to sociological knowledge about organ exchange and to expand the conceptual toolkit of organ donation to include the unconditional gift, the gift relation, gift exchange, body project, and body work. The rationale for the proposed model is to provide an explanatory framework for organ donors and transplant recipients and to assist the development of ethical guidelines and health policy discourse.

'Because you can't live on love': living kidney donors' perspectives on compensation and payment for organ donation.

CONTEXT AND OBJECTIVE: Living kidney donation accounts for approximately half of all kidney transplantation in many countries and is central to health policy focused on increasing organ supply. However, little examination of the economic consequences of living kidney donation has been undertaken from the perspective of donors themselves. This article documents living kidney donors' views regarding recompense and payment for organ donation, based on their experience. PARTICIPANTS: Twenty-five living kidney donors from New Zealand participated in this study. METHODS: This qualitative study, based on thematic analysis, uses semi-structured in-depth interviews to examine the experiences of living kidney donors. Themes were organized around altruism and the 'gift', perceptions of shared corporeality and identity, and donor support. RESULTS: Most participants agreed the donation process was costly in terms of time and money. Many incurred personal costs, and some experienced financial hardship. All the participants viewed financial hardship as a barrier to organ donation and favoured recompense for direct and indirect costs. Most did not support payment for organs, and none supported commercialization. DISCUSSION AND CONCLUSIONS: The findings show that framing organ donation as a 'gift' can stymie discussion about reciprocity, remuneration and exchange, making talk about financial recompense difficult. Financial well-being, nonetheless, has implications for the ability to care for self and others post-operatively. We conclude that the economic consequences for living kidney donors in jurisdictions where recompense for direct and indirect costs is insufficient are unfair. Review of financial assistance for live organ donors is therefore recommended.

Multiple meanings of "gift" and its value for organ donation.

The "gift of life" metaphor is used to promote organ donation where commercialization is prohibited. In this article, we explore how multiple parties involved in organ transfer procedures think of gift terminology by drawing on interview data with transplantation specialists, organ transplant recipients, living directed donors and living nondirected donors. The interviews took place across New Zealand between October 2008 and May 2012, in participants' homes and hospital workplaces. The interviews were transcribed verbatim, coded manually, and thematically analyzed. Although gift language is often viewed as clear-cut, the gift trope has multiple meanings for different constituent and cultural groups, ranging from positive descriptors to obscuring and romanticizing the complexities of transplantation processes. To account for these multiple perspectives, we suggest new ethical models to capture the nuanced phenomenon of organ transfer in ways that recognize the full range of donation and reception experiences.

Being-in-dialysis: The experience of the machine-body for home dialysis users.

New Zealand leads the world in rates of home dialysis use, yet little is known about the experience of home dialysis from the patient's perspective. This article contributes to the literature on the self-care of dialysis patients by examining the relevance of the concept of the machine-body and cyborg embodiment for the lived experience of people with end-stage renal failure. The article, which presents a discussion of 24 in-depth interviews undertaken between 2009 and 2012, shows that although dialysis therapy is disruptive of being and time, study participants experience home dialysis in terms of flexibility, control and independence. While they do not use the term machine-body as a descriptor, the concept resonates with felt experience. Data also indicate that positive experience of home dialysis is relative to socio-economic positioning and the lived relation of patients to others, necessitating further research to examine these factors.

Thanking and reciprocating under the New Zealand organ donation system.

Organ donation and transplantation has been extensively addressed in the biomedical and bioethics literature in relation to debates around organ allocation and procurement strategies, and concerns about consent, coercion and commodification. This article addresses the topic sociologically, drawing on data from face-to-face in-depth interviews undertaken between 2008 and 2010 with organ and tissue recipients, anonymous altruistic donors and donor family members to discuss questions of reciprocity and intercorporeality that arise in the course of tissue exchange. In particular, the article examines the place of anonymity protocol for organ donors and transplantation recipients in New Zealand and their responses to conventions and scripts surrounding this rule. The article concludes by calling for discussion to re-examine anonymity protocol and rituals around organ donation and transplantation, citing lessons from gamete donation policies and recent law in New Zealand as productive for thinking through matters of personhood and identity relating to organ transfer.

Perceptions of the gift relationship in organ and tissue donation: Views of intensivists and donor and recipient coordinators.

The international literature on organ donation and transplantation has drawn attention to the popularity of "gift of life" discourse among pro-donation advocates, transplantation specialists, and within organisations lobbying for improved donation rates to promote the benefits of organ donation among members of the general public. In Aotearoa/New Zealand, gift of life discourse is robust. Aside from attempts to elicit altruism by promoting tissue donation in the public domain, gift terminology separates the act of donation from that of commerce and the commodification of body tissues. In distancing donation from commodification and the potential to degrade and exploit human beings, it is assumed that gift discourse transmits the positive message that donation is a noble and morally worthy act. Recent sociological research has shown that assumptions of the gift as one-way and altruistic do not necessarily align with people's perceptions and experience of donating body tissues, and that the vocabulary used to describe these acts is often at variance with reality. This article draws on interview data with 15 critical care specialists (intensivists) and donor and recipient coordinators, examining their perceptions of the relevance of gift discourse and its applicability in the context of deceased donation in Aotearoa/New Zealand. The data indicate several problems with gift rhetoric to describe the situations health professionals encounter. In sum, gift terminology tends to downplay the sacrifice involved in tissue donation generally, as well as depoliticising the exchange relations of tissue transfer in contemporary consumer culture and in the global context. This raises questions about the underlying ethics of language choice and what, if anything, empirical accounts of tissue transfer can contribute to ethical debates.

Towards disability ethics: a social science perspective.

In the social sciences, debates about the discursive and material constitution of subjectivity and identity no longer appear to be at loggerheads. This has important implications for how we are to construct a framework for thinking about disability ethics. Following recent inroads in disability theory and in the sociology of ethics, we would argue that one of the aims of a disability ethics is not to view disability exclusively as a question of impairment, but to reclaim the social aspects of impairment in conjunction with the embodied aspects of disability. We would also suggest that the social and cultural construction of impairment, or abnormal corporeality, cannot be considered apart from the moral and existential relations that exist between disabled and non-disabled persons. The question we want to raise in this discussion is whether thinking disability ethics through a bioethics framework is adequate to this task.